People with lipoedema face healthcare barriers, forcing some to relocate
Women with lipoedema in the Northern Territory are struggling to access the care they need, forcing some to relocate for specialist treatment. The condition, often misunderstood, requires better medical support in regional Australia.
About three years ago Karen Kinnersley made the gut-wrenching decision to leave her much-loved Darwin home and relocate to Victoria — a place she had left two decades prior.
While living in the NT capital, Ms Kinnersley had been diagnosed with lipoedema, but had failed to find a Darwin-based medical specialist who understood or could treat the disease.
"I loved it up there [in Darwin], my three kids were there, all my friends, but my health was declining, so I really needed to prioritise my health and access [to] services," she said.
Karen Kinnersley says lipoedema is an expensive condition to manage. (ABC News: Harrison Tippet)
Ms Kinnersley has stage 3 lipoedema, a chronic hereditary medical condition affecting 11 per cent of people assigned female at birth.
It causes abnormal build-up of fatty tissues around the arms, hips, and legs and can lead to immobility.
Advocates say the condition is relatively unknown across Australia due to a lack of research, which sees those diagnosed with it spend thousands of dollars on treatments and therapeutics in hopes of maintaining their mobility.
Karen Kinnersley's weekly treatments cost between $100 and $140. (ABC News: Harrison Tippet)
Lack of services 'disheartening'
Jen Bartlett, director of Lipoedema Australia, said it was "disheartening and disappointing" that there's a lack of services for women across the country.
She said more research funding for the condition would lead to a greater understanding about its prevalence in the community.
Long-term Darwin resident Leah Potter, who has stage 4 lipoedema, believes this lack of specialist services is forcing people to battle the condition in isolation.
Leah Potter has stage 4 lipoedema and wants to improve community awareness of the condition. (ABC News: Michael Franchi)
Ms Potter said most people with the condition lived in pain and shame, which compounded other underlying health issues.
"I keep telling my story to every medical professional I see, and they don't seem to know about [lipoedema] or even believe me," she said.